Saturday, January 4, 2014

Pad Choice

Life post heart transplant is all about getting used to medicines. There are a lot. Danny takes them at 8:00, 10:00, 12:00, 6:00, 8:00, and 10:00. It's pretty hard to remember all of those times so we decided to make a time list and hang it above the medicine section. I feel like I'm a pharmacist when I'm pulling all the meds and it's pretty fun! At 8:00 am and 8:00 pm, the pills fill up a medicine cup and Danny swallows them all at once with water. He's a medicine beast as the kids say these days... :-) 
Danny's meds under TV with med schedule hanging above. The blue card is a table of what and when to take. 

We have ventured out to a couple of restaurants and boy do the people stare at Danny wearing his mask! Honestly, it would be better if they would just ask why he's wearing it instead of gawking. 
I already had a pretty good sense of how most people with some sort of physical or mental disability or handicap want to be treated...but watching Danny adjust to life with a mask makes it even more real. People just want to be treated normally and most people like to talk about themselves. For instance, some time ago I was walking down the hall from the Brent House Hotel to the hospital when I passed a man walking slowly, wearing PJ's, and carrying some sort of black bag. I knew it wasn't an LVAD bag, but it was definitely something medical. So, being the curious and pretty direct person that I am (sometimes definitely a short-coming), I said "Hi...what's in your bag?" He seemed happy that I asked and told me about his recent kidney transplant. I walked with him to the hospital and it was really a pleasant conversation! I think that's probably how most people with something out of the norm going on would like to be treated...either don't stare/ignore, or show interest and ask. I think learning about different medical conditions is fascinating. Last night as I was doing some laundry in the hotel laundry room, I saw a woman who was very interesting and with whom I really wanted to strike up a conversation, but I chickened out either due to subconscious wisdom or just fear. She is of the religion/culture that wears the head covering and long black "dress" where the only skin visible is a slit for the eyes. As I was walking to the laundry room, I saw her sitting on a bench with her son in a baby carriage. While I was in the laundry room, she came in, saw me, checked the clothes in the dryer, and then quickly left. A little while later her husband (I assume) came in to get the clothes from the dryer. I desperately wanted to talk to her and learn about her religion/culture/life. We made eye contact when she was in the laundry room for a moment and her big, brown eyes were beautiful. I think it would be fascinating to get to know someone with such different religious and cultural beliefs. I was worried that talking to her might be offensive and I didn't want that. 

Maggie and Charlie stayed with us Thursday and Friday night and it was great to have them here. We went to a small restaurant (at a non-peak time--important to try to stay away from crowds) and had what felt like an emergency at the time. Things were going fine and then Danny said "something's wrong, I'm leaking, I'm wet, my shirt is soaked!" I went in to "fix this" mode and instructed the kids to get ready to leave and wait in the car. Without thinking, Danny stood up to leave and began to fall. Without thinking again, he caught himself on the table, which is a bad move because he's on sternal precautions for at least 6 weeks I believe. The sternal precautions are no pushing or pulling, no lifting over 5 lbs, and no raising arms over the head. Catching himself to prevent a fall is definitely not following those guidelines! I helped him back into the chair and helped him calm down. He wasn't hysterical...but was getting close. He was shaking badly and very stressed because it seemed like maybe his chest incision had come open to allow fluid to come out. I helped him to the car and drove back to the hotel. He laid the seat back to the fully reclined position for the ride because it relieved some of the chest pain...which leads me to my painful mistake. As I was helping him get out of the car, I thought that moving the seat back up would be helpful...nope! When I pulled up the lever to move the seat up, the seat went down instead, which jerked Danny even lower. The pain was unbelievable...sternal precautions strike 2! We finally got back to the room and we worked up the courage to pull up his shirt, which was drenched by this time. 
Wet shirt from chest fluid

Pretty thick gauze pad soaked through

Fluid draining out of the incision
Thankfully, all incisions appeared to be intact. The fluid was/is coming out of the bottom of the sternal incision when he sits up or walks. I called the clinic and told her about the leaking, but forgot to tell her about the two accidents and subsequent chest pain. At first, she just said to try to keep the area covered with some gauze and to keep an eye on it, but then she called back and wanted to see him. Staying in the Brent House is such a blessing because from our room to the clinic is about a 5 minute (indoor) walk. The nurse wasn't happy with the amount of drainage and called the surgical team to come take a look. The surgeon that did Danny's LVAD, but was (sadly) out of town the day of the transplant, came to the clinic to check the drainage. It was so great to see him! He briefly considered putting in a small drain at the leak site, but decided against that. He said to just keep doing what we are doing (catching the drainage with gauze) is fine. He was more concerned about the sternum because he felt some grinding when he had Danny cough. He ordered a CT scan, but we haven't heard any results from that. I asked the surgeon if there was a problem would be be fixing it, and he laughed and said "no, the guy who did the transplant would fix it!" They are partners, and both very good at what they do, but definitely have different techniques. Surgeon #1 (LVAD) used 2 chest tubes and stitched closed the chest tube incisions upon tube removal. Surgeon #2 (transplant) used 5 chest tubes and prefers to allow the holes to close on their own from the inside without stitches. Apparently both techniques are considered proper, but to be quite honest, I think the 5 chest tube method is thought to be a bit excessive around here. Every nurse and doctor commented about having 5 chest tubes when Danny still had them in and the surgeon #1, Danny, and I had a good laugh about how Danny looked like an octopus. Personally (and I think I speak for Danny too), I prefer the holes to be stitched shut. However, the transplant was completely successful and Danny is doing well so we are not about to complain about something as trivial as chest tube holes!!!! 

The nurse suggested that we use maxi pads to put over his chest incision to catch the fluid. She said they're the right size and shape, absorb a lot of fluid, and would be an easy way to try to keep track of about how much fluid is draining. Danny didn't say anything to her but when she left he made a pretty funny face...I don't think he's going to go that route!! I suggested that nursing pads are also very absorbable! This will be something we will laugh at for years to come I suspect... 
Patiently waiting for CT scan orders Friday. The heart pillow for splinting purposes is invaluable during the painful recovery!

Today Danny is still draining fluid from his incision. A little whole ago I helped him sit up and it began squirting out like a hose. He screamed "Tricia, I'm peeing out of my chest!!!" It's pretty bizarre and we have no idea if it's okay...but it is funny looking!

Chest fluid squirting out...amazing!!

Chest fluid squirted out onto his pants and the towel!!

Warning...Personal details ahead so skip this paragraph if you choose :-)... After talking about the chest fluid a little, I realized it might be similar to the pressure from engorged breasts while nursing. Our first baby was born with an unexpected heart defect (unbelievable coincidence) and died 25 hours after birth. That was during a time when the medicine used to "dry-up" milk was not thought to be safe, so my milk came in the night before Daniel Jr's funeral. It was so incredible painful because my doctor told me not to express the milk because that would signal my body to produce more. I had to wrap my chest tightly with an ace bandage to help stop the milk. My breasts were so engorged, they were like huge, square bricks. The only relief I had was to stand in a hot shower and let the heat from the water naturally express some of the milk. Even a little less milk was a huge relief in painful pressure. Danny and I decided to try the same thing with his chest. I helped him in the shower and when he bent over a little, fluid shot out of his incision half way the length of the tub. It was amazing. As more fluid came out, Danny was surprised to discover that it was easier to breathe...He didn't even realize he was having some shortness of breath. I applied some pressure to his lower abdomen and sides to help get some of the pressure out and he pushed with his abdominal muscles. We did that for a few minutes, until it slowed down some and he became very tired. He's back in the bed now, the painful pressure is a little better, and it's easier to breathe. I also shaved his beard and moustache for him and wow!!!! He looks as cute and handsome as he did when I fell in love with him in high school :-) He hasn't shaved since the transplant, which was 18 days ago...I forgot how great he looks when he's hairless!! Danny did say that after he laid down it became a little harder to breathe...that's the fluid settling back down around his lungs as he lies

Hairless, slightly puffy face...less fluid after shower
Hairy, but still handsome!!

Something very funny happened the other day. Danny got some jeans for Christmas that have some growing room. The next day I gave him some slim cut, smaller sized jeans to wear and they were a bit tight. He commented on his jeans being tight, his puffy face, and overall weight gain throughout the day and it was apparent he was worried about weight gain. I kept telling him that with the amount of Prednisone and other steroid-based drugs he's on, it's an absolute guarantee that he will "fill out" and that everything is ok and he looks great. That didn't seem to help him feel better and I didn't realize what he was thinking until he said "my jeans are just so much tighter than yesterday. It can't be healthy to gain this much weight overnight." I cracked up laughing because it was two different pairs of jeans, the first are two sizes larger than the second. He was so relieved and we had a good laugh together. However, he's still not very happy with weight gain. I'm going to take frequent pictures of his face to have a visual timeline of increased puffiness. 

Danny just started laughing and said "are you excited to sleep tonight and I can chest pee on you!?1?" :-) 

He's amazed at how constantly hungry he is now (due to steroids). He told me the other day that he doesn't ever remember feeling the feeling of hunger before. Prior to this, Danny could easily go all day without thinking of food. He eats because it's the appropriate time and because he's with other people. That's certainly not a problem I've ever had!! 

I was pretty neutral about the Saints prior to "living" in New Orleans for much of the last four months. However, the people here are passionate about their team. I thought LSU fans were serious...but these New Orleans people are super serious!!! It's hard not to catch the Saints fever and I've had fun watching the games with Danny and then discussing the games with the hospital staff. Today's playoff game against the Eagles was great!! Geaux Saints!! Another nice note about New Orleans...Driving down St. Charles street (the residential section closer to Tulane & Loyola and the zoo) at night during Christmas time is amazing. The houses are already beautiful, but you add the Christmas lights to them and they are breath-taking!! 


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